"I'm Not Just Black but I'm Black and I'm Queer": Facilitators and Barriers for Sexual and Gender Minorities in Maintaining Continuity of Care

Background: Sexual and Gender minorities (SGM) are disproportionately at risk for mental and physical health disorders and disease compared to their non-SGM counterparts. Health disparities experienced by SGM individuals do not have a single source predictor, but are considered to have complex etiologies that include biological, behavioral, and social factors. Poor continuity of care and high loss to follow-up among several clinical populations (e.g. HIV, diabetes, depression) results in worse physical/mental health outcomes. This CTSC-funded translational health pilot study harnessed community stakeholder knowledge of the complex social, environmental, and structural processes that contribute to lack of care continuity for SGM individuals across the life course.

Methods: We applied Group Model Building to develop causal loop diagrams of connections and disconnections from physical/mental healthcare for SGM groups across the life course. Participants were recruited through a formal research partnership with the LGBT Center of Greater Cleveland including: elders (65+), transgender individuals, young adults (18-24), and Center staff. All Group Model Building sessions were conducted virtually over Zoom due to COVID-19. Two sessions were conducted with each group: an initial modeling session to generate exogenous factors and relationships between factors related to connections and disconnections from health care; and a second session refining the model after the study team generated a causal loop diagram. A total of N=27 individuals participated across the 8 sessions. Analysis was conducted across CLDs using an iterative and group consensus process to distill primary factors and relationships related to connection and disconnection from care across all groups. A third session was held with only the community group facilitator/coordinator to review and finalize the combined model.

Results: The combined causal loop diagram identified four key factors related to disconnection or lapse from mental/physical healthcare. Intersectional Structural Oppression explains how interlocking racism, sexism, heterosexism, queer- and trans-phobia at the societal level influence provider-client relationships. Intersectional Structural Oppression led to Provider Bias, which in turn decreased connection to healthcare. This factor also led to Pathologization of SGM people, including experiences of being fetishized, shamed, blamed, dehumanized and dismissed. Pathologization led to Emotional and Psychological Violence within care settings, and subsequent disconnection from healthcare. Two factors emerged that promote (re)connection to healthcare: Community Generated Interventions and LGBTQ2IA Holistic Healthcare.

Conclusions and Implications: The model generated by SGM individuals across the life course shows how insider SGM knowledge of systems accumulates. The connection to care factors—Community Generated Interventions, and Holistic Care—are derived from expertise in the population and insider knowledge of who to go to—e.g. where the affirming mental/physical health care practitioners or community-based resources are. These links between insider knowledge strengthen referral flows, and connection points, yet this specialized knowledge is rarely made visible to the wider service system. The integration of community knowledge to change system behavior is imperative for advancing health equity. In addition, intersectional theory is essential to make visible the experiences of SGM communities’ engagement and disengagement from healthcare systems.